Saturday, January 15, 2011

Better

Baby had her TEDDY appointment this morning. RG 85 after a breakfast of oatmeal and milk. A1C was 5.3. Up .3 from her last test but the nurse said it was normal in winter. I was SOOOOO proud of Baby during the blood draw because she sat in the chair by herself, not in my lap, and did the whole thing by herself. No tech holding down her arm or anything. She didn't like the hugger (tourniquet) the most. Get this she was 42 inches (same as the doctor appt) and 45.0 lbs. 3lbs less. They use a digital scale and not one of the old fashioned black weight ones. So I'm betting the TEDDY scale is more accurate and I don't think she lost 3 lbs in the last two weeks.I was talking to the nurse while waiting for the A1C results. I told her about Dad's comments about not being able to have so many carrots, corn and peas etc and not only did she agree with me that it was false but would be hazardous to her health. She said that it's one of the traps parents fall into, cutting sugar down too much, and that it stunts the kids growth - and actually causes harm to the brain! Type 1 is NOT type 2!She asked me if I'd finished reading the book they gave me and I had to admit that I'd only skimmed the second half because I was getting too upset/worried/stressed etc. She told me that the unfun part of her job is shaking parents out of denial. That right now they (me) are standing at the edge of the cliff and waiting for something to push us over or pull us back. While Miranda might not develop diabetes in the next 5 years I should be thinking "when" not "if" because with a positive in all 3 antibodies it's pretty certain.I told her my fears about the school system and the stories I'd heard about some pretty scary school nurses and she relieved my fears on that score at least. She said that since Baby is in the study that she will automatically become a patient of the Barbara Davis Center and that if I'm having any problems THEY will take on the school for me.I also talked to her about my feelings of "I did or didn't do" to cause this and that while logically I know that even if I did I couldn't have known (hence the study) and she pointed out that the environment is larger then just what I do - other kids/people/animals can all be the carrier and that until they KNOW what I can't be sure there was anything I could have done to prevent it. We also talked about stem cell research and she was happy that I understood that while we may come up with something to replace the stem cells in the pancreas until we stop the antibodies they will just get wiped out again.I suggested that there should be some kind of support group for the parents with positive antibodies. They have them for the parents of kids who HAVE diabetes but not before and that cliff is hard to stand at all the time.So a lot got talked out (she also said her son has been looking for work for a long time too so understood that stress) and I'm feeling better. It was good to talk to someone that understood ALL the aspects of what was going on with me without having any preconceived ideas of how I SHOULD be handling everything (no more carrots!).Still have an emotional overload headache though.

About Us

I'm a single mother with a 4 year old girl, Superhero Baby. Her name for herself. She can do anything. The problem? Her "father" is a Type 1 Diabetic and she has the gene. She's part of a study, so we know she is positive for all 3 antibodies. We've been told it's not "if" but "when". Odds greater then 50% that it will be within the next 4 years.
There is no support group for those standing on the edge of the cliff.
So I research and research and take my daughter in for her ogtts every 6 months, her antibody tests every 3 months and test her bg at home a couple times a week and hope.